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RE: Katie

Rex Winn — Thu, 19 Jul 2007 07:48:00 GMT

I agree but I really think if we want change then we need to make it closed ended change. A group of intelligent, savvy, non-emotional people need to sit down and draft a ratification to the current system. They need it present it in various revisions to a much larger group that provides feedback and commentary on each part of it. Then it would a huge part of acredidation to get a group of physicians to participate in a mock scenario to carry the idea all the way through implmentation. Placebo patients go to real physicians and a placebo process is followed from treatment to release and billing. Then we have a panel of bona fide physicians sign on off on the plan. Once that's done we work with an insurance company in the same spirit and get them to sign off on it. Once we've worked out all the kinks and made it a smooth and tested process, we wrap it up to put it on a future presidents door and we tell him Merry Election, make this work and we'll make sure you are the new man wearing the trappings of power.

Yeah, it sounds great and I realize there's a lot of ****WORK**** in that grand scheme but it at least is the beginnings of an idea. I do believe there are a few reading this thread that are way more savvy than myself who could probably pen something out absent mindedly as they watched mythbusters or Man Vs. Wild on T.V.

We are overloooking another piece of the equation that I think is bigger. How to help families who have had true hardship. My family is under burder for medical bills but that's only 1/3 of the issue. We were devestated by a layoff, burning through a 401K and other 'bad luck' issues. There has to be some way to get relief for families like us.

-- Today I'm calling all my creditors to ask for debt forgiveness or debt reduction. If you are a believer of any sort say a prayer for me because I'm taking on one of the most powerful mogul businesses in America.

But in order for this to all work (what I'm trying here and in other places on the net) I have to do my part so that you are more willing to do yours. This means that I cannot just sit with my pretty little hand out. I've got to break a few fingernails and try to better my situation.

By the way I've tried to get help from breakingnews@ktvb.com (my local T.V. station) and from the Oprah Winfrey show. I think it would really bolster my efforts if other people wrote in on my behalf saying, "This guy is the real deal and he's got some issues that really do matter to people in the U.S." so take 5 minutes to go wade through the Oprah site and send a comment. Use the email above to contact my local news agency. It's hard to deny a bigger group with one battle cry.

If that doesn't work then I'm burning a bra er... no wait a bottle... uh... a feeding pump on the steps of the nations capital in protest.

RE: Katie

-=JLK=- — Thu, 19 Jul 2007 06:36:00 GMT

This is just my "political" opinion but Health Care in the US is Huge business and in the US big business is the "bible" of the country. Changing it from a "for profit" system to a "non-profit", government run system would be as likely to succeed as the peace process in the middle east. There is just to much vested interest in the status quo. There are so many "Pros" and "Cons" on both sides of the issue that I doubt we'd ever get a real workable concensus. If we every actually did there would be so many compromises along the way the resulting system would probably be unworkable anyway.

Sorry this was a little off track of the main topic for this area, but if folks really thing they want a National Health Care system we need to start writting congress (I do about something at least once a week, I'm sure I'm on a watch list somewhere )

James.

RE: Katie

Richard Gardner-291039 — Thu, 19 Jul 2007 02:50:00 GMT

Just been reading all this, and I have to say as a UK citizen your healthcare system is pretty barbaric.

There still seems to be some political reticence on the part of some posters to even consider a national health system like we have in the civilised world.

Of course Michael Moore's new film is getting some good press over in the UK at the moment, which I hope is good news for American opinions on US healthcare, I've heard some of the horror stories, and Rex's is one that just wouldn't have happened in the UK. Why the hell should the guy have to worry about money as well as his daughter ?

I'm pretty lucky, I haven't needed the NHS, but I'm more than happy to pay for it, the cost is not exhorbitant as a % of my taxes, in fact it is almost certainly cheaper than your own insurance premiums (I have a rough idea of what you're paying), and remember you've already got a huge (and to my mind) pointless beaurocracy in the form of Medicaid. All having a national health service would mean for America is the elimination of a huge middle tier of insurance agents and claims adjusters, and who'd miss them? I've only needed insurance twice, once for a burglary and once for some drains, on both occasions they've wriggled out of paying the full amount, I'm glad I don't have to trust them for anything else.

I'll buy a raffle ticket to help out one specific (and particularly sad) case in a developing country, but please America, get a health service.....

RE: Katie

Rex Winn — Wed, 18 Jul 2007 20:38:00 GMT

Katie Beckett is medicaid for people who have children that are sick enough they'd break even a wealthy family. Or in other words... Katie Beckett qualifes families that would make too much money otherwise for medicaid. We have been qualified on KB since 03 and on Social Security Disability since 04'. Social Security trumps KB but it's income based. If we make to much to qualify for SSDI then we would roll back to KB.

RE: Katie

Timothy-313907 — Wed, 18 Jul 2007 18:30:00 GMT

I thought Medicaid was for poor people. I don't know about Rex's finances but from hearing him talk about being able to work 40 hours a week and be comfortable, I doubt he'd qualify for it.

RE: Katie

Joshua M Perry — Wed, 18 Jul 2007 12:00:00 GMT

I'm definitely not half attorney, but I have been fighting my own battle with Medicaid for about the past 18 months. And no, I don't get any special treatment or help because I work for the State of Wisconsin.

It's sad that LBJ is only remembered for Vietnam since Medicaid has been a great help with my daughter. She has cerebral palsy from a birth injury and has had close to $300,000 in medical bills since she was born, about 15% not covered by insurance, all of which has been picked up by Medicaid. There is a treatment called HBOT that is supposed to help with her condition, but Medicaid has refused to pay for the treatment, which is why I sound like an attorney. I'm actually close to filing a case in federal court just to get the state to pay for the treatment. I have the advantage of a case in Georgia to help me - Georgia Dep't of Community Health v. Freels, 258 Ga. App. 446, 576 S.E. 2d 2 (Ct. App. 2002) if you want to read about the insanity of Medicaid.

I'm disappointed that Rex did not receive the help he needed from Medicaid because it was the responsibility of the state to ensure he received that help, but I know from my own experiences that it is often the case that the opposite is happening. Some states try to do the very least they can under Title XIX just to save money. There was even a case in federal court against the State of Arkansas where the judge wrote in the decision, "Finally, we remind the state that it has a duty under 42 U.S.C. § 1396a(a)(43) to inform Medicaid recipients about the EPSDT services that are available to them and that it must arrange for the corrective treatment prescribed by physicians. The state may not shirk its responsibilities to Medicaid recipients by burying information about available services in a complex bureaucratic scheme."

So it is no wonder that Rex ended up where he is. From the beginning, the State of Idaho shirked its responsibilities to inform him of the rights his daughter has under Title XIX. National healthcare will not help in this case since it is more or less already there. The problem is that no one knows about the benefits because they are buried in a complex mess of social workers, forms, and approvals. Generally this is worse in states where they hire a private HMO to manage Title XIX, since the HMO is paid based on how much money they can save the state. This leads them to do pretty much anything they can to deny services.

As for me, I have received great support from my local community to raise the money to pay for my daughter's HBOT treatment, regardless of what happens with Medicaid. My family organized a fundraiser - hannahshopefestival.com - and the community really came through. Now I can get my daughter the treatment she needs and worry about Medicaid later.

I am honored to work in a profession where the community is so willing to help one of their own in a time of need. Please do what you can to help Rex since you never know when something just like this will happen to your family. I know I never expected anything like what happened with my daughter. I'll definitely be buying my tickets when I get my paycheck tomorrow.

RE: Katie

SteveRowland — Wed, 18 Jul 2007 11:17:00 GMT

If you lost your job due to outsourcing, I think there is some government assistance specifically for this.

RE: Katie

Rex Winn — Wed, 18 Jul 2007 10:24:00 GMT

Our entire family lives here and they are the biggest form of support we have. Without them we'd be a shambles so moving isn't really an option. Both sets of grandparents have made monumental efforts to help us. A weak example but it is one...

Today is my 33rd birthday and my wife and I usually go out on a date about 2 times a year. We didn't do a single thing on our anniversary in June (had a lot of really stressful things going on) which is putting as happily at the 12 year mark (married since we were 20). So tonight we really want to go out somewhere and my parents are going to watch the kids. My mom is not intimidated at all by watching Katie and they are willing to 'vent' her and everything. My parents have totally embraced Katie and her condition (so have Deanna's) and so we actually have trusted child care. Of course they also have an entire manual (my wife typed up about a 14 page long guide) for caring for Katie and "What to do if..." which has doctors phone numbers, etc...

So tonight we are going out for the 2nd time this year (last time was in March) and just she and I will go eat somewhere. Usually we only have enough time to eat and relax and then we go pick up the kids and head home. I cannot imagine being able to do that in NYC.

Another problem is that if we sold our house right now we'd take somewhere around a $40,000 to a $60,000 loss before paying agent commission. The market tanked here and there's a huge saturation of homes. They've placed a moritorium on builders and no new homes can be built. However, houses still appraise really high. We are hoping/trying to get an appraisal on our home high enough to fold a lot of our debt into it. We know that's stupid but it sure would take so much stress off of us. Buying groceries on an American Express is really getting hard.

...uhhhh where was I...Yeah, so the other problem is that Katie was born when I was a Junior in Computer Science at Boise State University. I had to drop out. So I don't have a degree and in the U.S. Job Market that puts me at the bottom of the barrel. The last job offer I got for a bona fide position was $15.00 an hour. Even though I worked at Micron for $64,000 a year. The job market here for tech labor is horrible. Especially since Micron just laid off the rest of their IT department and outsourced all of it.

Plus... if we didn't have the medical/related debt from being laid off, losing a home and being medically uninsured the income I make is pretty good. We could have a very comfortable life (not wealthy but I could just work 40 hours a week and we'd be fine).

So ... I just spilled my financial guts and now I feel kind of sick to my stomach. Ugh!!! This has been a very hard thing to go public about but people really do have a right to know if they are going to give. I have to be transparent to not look like a scammer. If I was my stories all over the internet wouldn't match up *BUT* they DO!!!

Happy Birthday To Me; I'm Turning 33.

RE: Katie

Mike C — Wed, 18 Jul 2007 10:10:00 GMT

OK, the reason I ask is I was just wondering if you've considered moving to another location, possibly with more opportunity? There are a lot of places hiring out here (NYC area), and many of them have excellent insurance benefits. Plus there are a lot of excellent hospitals, etc., in the area. I know you have a lot on your plate right now, but if you're interested I can put you in contact with some recruiters I deal with out here. Just send me a Private Message if that would interest you.

RE: Katie

Rex Winn — Wed, 18 Jul 2007 10:10:00 GMT

Someone gave me the idea of calling the places we owe money and asking them to forgive the debt or part of it. I'll be doing this in the next few days as you are right... I doubt I would have much affect on their bottom line at all.

I'm also going to try and contact some kid oriented organizations that help with kids, medical stuff and all that and see if they have ideas. I've learned in life it's not so much what you know as it is who you know or who they know.

RE: Katie

SteveRowland — Wed, 18 Jul 2007 10:02:00 GMT

It would be nice if some healthcare businesses would just pony up and volunteer some time and space, I mean really, if they took care of all of your needs for free, I doubt there would even be much of an effect on their bottom line. I know plenty of Doctors and surgeons, and they all bring in between $500K and $1M. You would think there would be some room there for them to do some probono work, but I guess I am just wishing...

RE: Katie

Rex Winn — Wed, 18 Jul 2007 08:14:00 GMT

Most people might know about Boise, Idaho which is pretty much where I live. I now live in Meridian because the city of Meridian annexed my home out of Boise.

But yes, I am in Idaho. My wife, all 3 of my kids and I were all born in St. Luke's RMC in downtown Boise.

RE: Katie

Mike C — Wed, 18 Jul 2007 08:02:00 GMT

Hi Rex,

Where are you located now? I saw a reference to Idaho in Katie's story, is that your present location?

RE: Katie

Rex Winn — Wed, 18 Jul 2007 07:41:00 GMT

Oh I agree there needs to be changes. I'd love to bring about some of those changes. To be honest I think I'm just starting to get momentum on something that over time might be able to produce some change. I doubt I'll fix everything, I'll be lucky to fix one thing. But in this life I'm learning that the only thing that truly can stop a person is the gray matter between their ears.

I was actually laughing with someone the other day about this very thing. I told them Katie's first week in the hospital produced an $89,000 bill and they said, "Who the heck pays for that? How can hospitals even expect to get paid for that? Where's the money even coming from?" I had to agree the absurdity of the costs was stifling. How do hospitals really manage?

Anyway, none of that needs answers here but maybe some change is due somewhere...

RE: Katie

Timothy-313907 — Wed, 18 Jul 2007 07:33:00 GMT

Have to agree with Robert here about universal healthcare. Given Katie's condition I doubt it would completely solve every problem you have, Rex, but it would certainly help. I think organizing raffles and such that this site is doing are great, but these are efforts that are brought about usually only in extraordinary circumstances. There are probably many other families who are going through similar things but don't have connections to well-read sites to get their stories heard. I'll donate to your cause but I'd really like to see the healthcare system in America be setup to more intrinsically help those in need, and not require people to make a lot of noise to get attention.

RE: Katie

Mike Metcalf-160221 — Wed, 18 Jul 2007 03:21:00 GMT

Hi Rex,

Your story really touched my heart, I bought a ticket and only wish that I could have bought more. I know how hard it is when my kids are ill, and thats nothing compared to what you're going through.

I hope that she comes out of this well, and will try to donate as often as I can, in the meantime my thoughts and prayers are with you,

Mike

RE: Katie

Rex Winn — Sun, 15 Jul 2007 09:48:00 GMT

:cough:

Check out http://www.notreadytogiveup.com

Thanks for the idea Matthew!

RE: Katie

Robert Bowles — Fri, 13 Jul 2007 11:53:00 GMT

If we had universal health care there would be a lot less headaches for you in general. It doesn't fix every problem but we have to get a clue and vote for it. It is our government and our money and we need to learn to to what other countries are doing for themselves.

RE: Katie

Rex Winn — Fri, 13 Jul 2007 11:12:00 GMT

Gosh there's a lot of information in this thread. I need to publish it somewhere... This is the most mature adult response I've gotten so far and it's really given me a chance to be transparent and to talk about all aspects of what we have been through. I know I cannot really prove a thing but hopefully the text here and the detail will help put people more at ease. I wish I could invite all of you to my house for a day just so you could see, touch and hear what goes on...

What a mess! What a total mess!

RE: Katie

Rex Winn — Fri, 13 Jul 2007 11:06:00 GMT

Why does it feel like that one sentence is hugely inadequate for expressing the need and the solution?

I don't know enough about health care but I do know a lot about social assistance programs. I think if this nation wanted to do something great that wouldn't be nearly as daunting as nationalizing health care they'd fix the welfare programs.

My wife and I walked between the lines on every program we knew/know of and it's such a hassle. We get phone calls, quarterly audits and everything for a small $22 check we get every month. I know (yes personally) so many families that are taking advantage of the system and they don't have to do anything.

I think that social assistance needs to be hugely revamped and if you get welfare and food stamps a worker comes to your home every 3 months to assess your needs. In that time you demonstrate that you have been very proactive in trying to pull yourself up by your bootstraps and if you do demonstrate that but still are short (and you have a kid like Katie) you get hassle free help.

A social worker helps you to review needs both financial and medical. You work out a care plan for the next 3 months and she/he helps you by coordinating doctor visits, insurance assessments and other things. Reduce the number of people drawing social assistance by 90% because so much of it is fraud and improve the quality of it by 90%.

My wife and I don't know enough. We simply don't. We tried to get a nurse to help us with Katie a while back and the one we got was horrible. She couldn't have taken care of a stick of butter. But the nurse who came to give Katie a Synagis shot (a booster for RSV that's a $3000 per injection) was so dang knowledgeable it was insane. She sat and visited with us at length and did it off the clock. We only saw her 4 times ever but she went through our finances with us. She told us "how" to legally get around certain hitches in the system and to try and get help. She went through our infamil formula needs and said she'd fill out a slip for us to get a case of it for free. That case was worth over $1000 to us (it lasted about 6 days but it was hugely wonderful). This lady had so much knowledge and wisdom. She was a grandmother (of course) and had been a nurse for 30+ years.

I think the biggest problem is that the information and how to find it just isn't out there visibly. There's a guy here who's emailing me privately about the Katie Beckett program. He must be half attorney because he knows so much about it.I don't know if we need to radify health care here. It seems like every time our nation does something huge like that they screw things up worse. I think what needs to happen is that the abuse of current systems needs to be aggressively pursued and stopped completely. I think that they should use as much money as they have but instead of spreading it to 90% abuse and 10% real need they need to focus it on the 10%.

If they fixed all the abuse and focused on a "One Stop" location that had all the information and each family was assigned a fully informed case worker it would help so much. I think there would be less of a burden on the system and costs would come way down.That's my two cents but then we've been right in the middle of it so maybe should say that my four cents...

RE: Katie

Robert Bowles — Fri, 13 Jul 2007 10:49:00 GMT

Another good example why we need a national health care system.

RE: Katie

Rex Winn — Fri, 13 Jul 2007 09:16:00 GMT

I think I look like a scammer. Unless I get a TV station or some other type of large well known public institution to help I'm going to look more like a scammer. The only way to offset this is to be really transparent at places like this message board so that people have enough to see and go, "No way he could make that up." I know there are people here who have been in similar shoes who can read what I've typed and would discredit it instantly if they thought it wasn't credible but it is credible and most people know it when they see how transparent I'm being.

RE: Katie

Rex Winn — Fri, 13 Jul 2007 09:14:00 GMT

I actually cannot make enough money with full time work. We'd be devastated if I tried that. As far as bankruptcy goes (and I cannot tell if you are suggesting that or not) my kids have been through so much stress already my wife and I both agree they need stability and we are going to do the best we can to guarantee that. My son (interestingly enough) seems to have been the one most severely impacted by this. He was first born and has an unbelievable memory. He got to watch us rushing around trying to save Katie's life a lot. He's seen paramedics at our home frequently. He's lost his room which is his domain so many times. We've had to move about 9 separate times since he was born and he's 6 now. My daughter Paige is also showing some signs of stress too. Katie is the sleeper in all of this and I know she's the worst affected one there is but she hides it.

No matter how much work I have I always stop from 5:30-6:00ish till 9:00ish and then work 9:00 to 11:30 so that I have time with family. I try to only work 6:30 to 10:00AM then 2:00 to 5:00PM then 9:00 to 11:00PM on the weekends so my kids get the most of my time. And if I do take full days off and I do I try to do it during a work week and they love that.

My only hobby is exercise and my kids. I'm fine with that because before Katie was born I had an unhealthy amount of hobbies that took me away from home for too long. I used to race mountain bikes and that's just a huge time suck. I'm actually really enjoying working at home where I can always see my kids. My office door is always open and they come in at their own will and I always stop to talk or help them on something.

Yes, I would just roll across domains with pointers or redirects.

RE: Katie

-=JLK=- — Fri, 13 Jul 2007 08:28:00 GMT

Rex,

You have my prayers and best wishes. I bought a ticket and wish I could do more. I'll try to remember and get another one next month. Try not to be to hard on the folks that got down on you thinking you were a scammer. I'm an ex-cop and my first thoughts (even when seeing your post here at sqlservercentral.com) was "Is this a scam?". Unfortunately there are a lot of people out there that will take advantage of others generosity by concocting such a story. The really terrible thing about those type of people is not how despicable they are, but that they take money that might otherwise go to someone who truly needs it.

There are a lot of folks in similar situations and it is unfortunate we can't help them all. However we tend to notice the ones that make the most noise, so as a father your doing exactly the right thing by making as much noise as you can. Keep shouting, there is nothing wrong with asking for help.

Just two days ago I was complaining about the cost of sending my daughter to college (she starts this fall, Computer Engineering). After reading your story I was reminded that there are a lot worse things to have to worry about. While my contribution is small, I hope there will be many such small contributions and that they can help make a difference for you and your family.

I also wanted to add my thanks to Steve Jones and Red-Gate for taking the time and this forum to allow us an opportunity to help a colleague. I know you can't do it very often but it is nice to be able to every now an then. When I was in the Military and as Police Officer we always had "Funds" that we contributed to, to help our own when in need. I'm glad to see a little of that here among Technology Professionals. We can't help everyone but we can make a difference for some and that's a start.

Best wishes to all,

James.

RE: Katie

Robert Sterbal — Fri, 13 Jul 2007 06:54:00 GMT

I hope you ask for help in all domains of your life. I also hope you slow down, consider full time work, and evaluate other lifestyle changes.

Most bankruptcies in this country are due to medical conditions. That won't go away with socialised care, because some care is done out of love and not out of cost efficiency.

Don't change your domain, just mirror the content/pointers.

Best wishes to you.

RE: Katie

Rex Winn — Thu, 12 Jul 2007 21:46:00 GMT

Matthew I just reread your whole post again now that I'm not working on a PC and all my kids are asleep. What a great suggestion and what a firm piece of encouragement. That's like total "coach talk" and that really is cool. You are right. Katie is bouyant. She has a laugh that spreads like a virus. If you hear it you'll crack up just because there's so much belly in it (which is odd really). Katie is fiercely defiant and if it hurts she won't say a word. She wants more than anything to be treated like a "normal" kid and she doesn't for a second want to be coddled. She will lead the charge into the fray for that very reason.

So you are right. Changing domain names or moving things over to pediatricparents.com (which I've had registered since 2003) is the right thing to do. As a father you make a good point. What values do I want to instill in my kids? "GivingUp" or "FightingHard"? That's a no-brainer and you make such a good point. I feel like a total "Duh!" for not seeing that sooner...

Thank you for the comments. The constructive help is totally so thanks!

Well erm... I owe, I owe so back to work I go...

RE: Katie

Rex Winn — Thu, 12 Jul 2007 21:32:00 GMT

Wow, thank you Brian!

To answer the question, "Why didn't we ask for help sooner?" That's actually been a pretty daunting experience. They detected Katie's problem in the 20 week ultra-sound before she was born. The O.B. saw some gray loops in her bowel that I couldn't tell from the paper but he saw it plain as day and knew what he saw. Immediately we did an amnioscentesis to rule out chromosomal defects and we did the only thing still out there is Cystic Fibrosis. But once we narrowed it down to a small bowel obstruction the O.B. said, "It should be a minor surgery to remove the obstruction and she'll be home in a week." So we thought, "Hey no worries we can do that." The hospital coordinator came around and said, "Do you guys need help with the financial planning of this?" We said, "No, she'll be here a week and we have insurance." (Wish I would have known at that time that Micron would lay me off a year later.) So the care coordinator disappeared never to be seen again.

A bit later that day the Neonatologist comes by the room and says, "Bad news. Katie probably doesn't have enough bowel to live on." We flip out naturally and he says, the laprascopic procedure tonight will confirm the diagnosis and if we're right she'll go home with you and slowly die of starvation you should get a few weeks with her before she dies. Wow! Great!

So we bite nails waiting for the surgery and the surgeon calls and says, "The good news is she has plenty of bowel the bad news is that it's not real healthy." Nobody told us she'd be there for 2 more months. When your child is in the hospital and on life support you really aren't thinking "How am I going to pay for this." When she finally comes home for more than a few days four months later you might start thinking about those things. We didn't get a chance. For the next 8 months she threw up a lot and we were in a fight to keep her alive. We had paramedics over for some late nights. We were almost always up all night taking turns sleeping and finances... Well crap. We were between the house and pediatrics a lot. We were buying formula and skipping meals ourselves. Neither the pediatric surgeon or the pediatrician ever bothered to mention the programs that were out there. We knew we were maxxing out financially but if you know the "Laws of heirarchical needs" very well you'll know that survival tops the list. We were fighting for survival. I remember 1 day after I had foot surgery and was supposed to keep my foot elevated I had to rush Katie to the E.R. walking on my foot to get her there. My foot has never been the same and it's hurt ever since. We were in full on "fight or flight".

Then in October of 2002 we had the G-tube/fundo surgery because Katie was dying and we couldn't deny that anymore. We had to save her life. Even if it means sewing her esophagus so she cannot throw up might mean she cannot have kids because of morning sickness we did what we had to do. We thought after that surgery we would be better off. We weren't. For the next 2 years Katie kept trying to throw up on the same interval if not every day every other day. We were more stressed out than ever before because we now had to pump stuff out of her stomach. Were we thinking about money? Not until I got laid off in 02/2003 then suddenly we were moving in with family and I was desperately trying to find work. At that poing the Pediatric Surgeon says, "Hey have you heard of Katie Beckett?". We were like, "What?" and she explained it to us. We frantically did everything we could to get into that as fast as we could but they don't back date past 90 days. So no real help there (she actually told us about Beckett in 2002...anyway).

Then I thought I had a job for $90,000 a year. But 9 days after they hired me as a 1099 and 7 days after we bought a house they let me go because they lost the contract they hired me to work on. Now we had real money problems. But again life was so fight or flight you don't have time to approach the internet (something you know next to nothing about) and try to drum up help. I tried in 2003 and 2004 you can search codeproject.com for pediatricparents.com but nothing really turned up.

Only now when it's obvious that we are way, way, way over-cooked do we see that we need some help. Only now after working 80 hour weeks for 3 years on ASP .Net sites with SQL Server backends do I know how to use the internet and have a good position at codeproject.com to work from. I have some credibility there. Not a ton because there's no face value and I'm asking for money. Still the visible support has been amazing.

Aside from us being locked in a "fight or flight battle" and hardly having time to think at all from 2001 to 2004 and then me working frantically from 2004 to 2007 to cover the bills we did have... It's been pretty hard to come up with any type of reaction plan. My wife and I have never ever been through anything like this. There is no manual out there that tells you how to prepare and plan for things once you are in a fight for survival. It was very hard to remember to bathe and there were 3 straight years where I bathed about every 3 days on average.

We should have asked for help sooner but where and from who? It was hard enough just to find the time to cook dinner. We've eaten so much mac & cheese and baked potatoes that it's all we know that and lots and lots of eggs. Cheap staples are what we lived on. Shaving every 3 days was a way to save money on razor blades and shave gel. We did what we could and we did what we had time for.

I just don't know what else to say to answer that. It's been really hard just to manage life.

RE: Katie

K. Brian Kelley — Thu, 12 Jul 2007 20:53:00 GMT

My two year-old daughter has medical issues, some of which we're still seeing specialists for to see if we can try to diagnose why certain problems still exist. It has torn up my wife and me as each new doctor's visit or lab sample brings with it a new round of fear and trepidation. We just had one visit this week with a specialist and we've got another one at the end of the month.

With that said, our daughter has never been close to being in much danger as your daughter has. And some of the issues you describe with her at 5, such as requiring so much sleep and having to miss a meal a day, etc., I can't even imagine facing. You and your wife have been incredibly, unbelievably strong in the face of everything. I'm going to show my wife what you've posted about your daughter and we'll be making a donation. While we may not comprehend the full extent of what your family has gone through, our own slice with our daughter gives us a bit of perspective.

I understand why some may react cynically, One of the questions was, "Why didn't you ask for help earlier?" I can tell those of you asking that question that if you haven't gone through medical visit after visit over your child, that really the only thing you think about is your kid. It's hard to concentrate on other things like finances, obligations, etc. The immediacy of the medical issues are all consuming until they become overwhelming.

RE: Katie

Rex Winn — Thu, 12 Jul 2007 15:00:00 GMT

I totally agree. Yesterday I changed http://www.readytogiveup.com/default.aspx. I put up a short letter saying what you are saying.

Some background on the domain. 4 weeks ago I hurt my back really bad (turns out it was a severe muscle spasm) I was in the emergency room all day and they did MRI's and loaded me up with steroids and pain medicine. They sent me home but I couldn't stand or sit for about 7 days. I laid on my back on the floor and got way behind on work. My usual pace is a 80+ hour work week spread out over 7 days. I usually start sometime around 6:30AM.

I laid on the floor for 7 days, slept horribly (not really at all) and one night I was up at 2:30AM kneeling in front of my PC. I posted a "ready to give up" message at codeproject and really wish I hadn't. But at the time I was exhausted, on percocet, in lots of pain and just not feeling super great. I should never have made that post as I had not even talked with my wife before doing it (first reason to not do something). But I did it. The response at CP was overwhelming and you can see evidence of support at codeproject.com all over in people's personal signatures.

Over the next 4 weeks after making it that post I started to get caught up the pain was going down and I was feeling better. I have debated just taking the site down but on talking with some close friends at CP I was told not to and if I did they were going to be furious. I'm not making that up either. About 3.5 weeks into it a guy blasted me about being a scammer and said I was doing illegal things with the site. I took the site down that Sunday night (got totally reamed by people from CP for doing it) but wanted to make sure I was being legal. I called Barry Peters here in Eagle, Idaho and he confirmed it but said I should also call Steve Nipper which I did. I spoke with one other attorney, a friend and he didn't know of anything. So I put the site back up but I hamstrung it. Then yesterday I spent the day with my family and really thought about it. I didn't like the whole idea but I'd kind of come too far to turn back and was sort of stuck. I've emailed Orpah, KTVB here in Boise and some other places and have kind of taken the approach that if I don't get a response in 30 days I'm taking the site down or at least just leaving a note up like I have it.

I'm not ready to give up. When I slept 4 hours a night for 3 years sitting next to Katie making sure she didn't choke on vomit I didn't give up and I'm sure not giving up now. I actually hate that site but I don't know what to do. If I do take it down right now in the face of that recent credibility attack then I do look like a scammer. I'd love to get bona fide help from a place like Oprah Winfrey's show or my local T.V. stations but have yet to hear back from them. Since I have emailed them I need to leave up the site or I look like a scammer. I even look like a scammer to me and that bothers me.

You have a point though. If I do leave the site up changing the domain is a good idea and might sit better with people in general. It won't sit better with me. I don't think I was in the right state of mind to do this to begin with and now that I'm 4 weeks into recovering I feel better and stronger about life. I'm as confused as I could get about what to do and I feel like a TV station or a TV show might be able to give me some really good advice for how to do this better. It's not like I've ever done this before.

I'd really like to move everything over to pediatricparents.com and not just make it about Katie and us but allow parents from all over the place to share about their own children. I want to create a site where each family can have a blog they can make public or private, their own web site for sharing photos and stories and maybe have a public message board where families can share ideas, support and other information to have a community support environment. The only drawback to all of that is that it takes time. I have real paying customers that want me to work on their stuff right now and it's hard to find the time to get pediatricparents.com up and running. Then I need to figure out how to market it. But that's way over the next horizon.

In a nutshell I completely agree with you. I don't like it either but that's because I'm off pain killers, I'm sleeping a bit better and depression is moving off into the horizon. I feel more myself and I feel more like fighting for what matters.

- Rex

RE: Katie

Matthew Hicks — Thu, 12 Jul 2007 13:14:00 GMT

I haven't decided if I'm going to buy a ticket yet or not, but I thought I would offer an opinion: If other people are like me (there have to be at least a couple), they're going to be put off by the domain name (readytogiveup.com) -- it just sounds very defeatist. I'm not judging you personally -- I ready your story and I certainly understand that things looked extremely bleak and discouraging. But the name is not good marketing; cleaning products don't mention dirt in their names. Just FYI, I checked and the domain NotAboutToGiveUp is available, which at least sounds a little bit more positive (and sort of describes the Maximus story from Gladiator as well). I also think that in the future, when your daughter is older and doing better and maybe becomes aware of your efforts on her behalf in this arena, it might be better if she sees a different domain name. Just a thought. Good luck, regardless.

RE: Katie

Steve Jones - SSC Editor — Thu, 12 Jul 2007 10:41:00 GMT

Rex thanks and if anyone has questions, feel free to post them here.

RE: Katie

Rex Winn — Thu, 12 Jul 2007 09:08:00 GMT

I'm the father of Katie Winn and before I do anything else let me first say thank you to all of you and especially Steve Jones and SQLServerCentral for doing this on Katie's behalf. I say Katie's behalf because it's important for me to remember that she's why I'm doing this. It's been very challenging but I have to do it for her and it that's what matters.Steve has asked for an update and where better a place to put one than right here. (Steve, feel free to move this wherever you think it works best.) Also some of you may wonder why I've tucked a lot of the site away behind the media relations link. To be honest I just didn't feel like it was working. Prior to Steve's announcement here I wasn't getting a single donation in the last 9 days. I was taking some flack as being a scammer and a guy I respect at Code Project really go me thinking about how I wanted to do this. The news in this is that I'm going to be adjusting the site a lot and gradually I think I'm going to polish it a lot. I'm a Software Engineer a husband and a father. I'm not a desperate cry for attention and I think the site that is currently tucked away kind of has that feel to it. Oh poor me. Rescue me. I don't like that. I want to make it more informative, less emotional and I need it to get the attention of news and online agencies who have the ability to give me credibility.UPDATE ON KATIE WINN:So the site has a lot of information about Katie's condition, her birth and some of the things that have gone on but certainly not everything. I simply don't have time for that as it would take me and HIPAA both a year to wade through all the data. But I'm going to shoot from my hip and tell you what we know and honestly it's not as much as we'd like to know at all.Katie is now 5 years old and doing so-so. She has a lot going on and we don't understand half of it. For example it's 9:00AM right now our time and she's still in bed. She needs about 11 hours of sleep a night and is still tired when she gets up. For a 5 year old that's crazy. My other two kids at 6 and 2 years of age practically bring down the house after 8 hours of sleep and could power a small city if we put them on a treadmill. So Katie is tired * a lot * and that's been impossible for us to figure out.We know that she's suffered extensive damage to her small bowel and we know that it's been cut and handled a lot. This handling and surgery makes the possibility of scar tissue and partial obstruction a real possibility and we have to be wary of that. Right now the going theory is that Katie has parts of her bowel that are damaged to the point that they don't contract at all or they contract in the wrong direction. Which parts of her bowel are affected? The short answer is that we don't know. Medically there's no way to measure that here in Boise, Idaho. We need to go to Portland or Seattle but I've been told that Boston would be best. Apparently in Boston they can spend about 30 to 45 days recording data from stem pads placed around her belly that will capture the contractions or lack-there-of from her bowel. They can use this data to begin building statistics and probably attempt to improve it with various foods and such. I don't honestly know. I'm pretty sure it's theoretical medicine and I'm very sure (but I haven't formally asked) that insurance (Social Security Disability Medicaid) won't cover it.Why haven't I asked? Well I'm self-employed and have no idea how I would afford a 45 day stay in Boston or the costs of the related care. It's just beyond me to fathom that. I think I could move my office there and work short-term but the cost-of-living would be a huge hit. We might be able to stay with some friends but don't know that for sure or for how long.We have maxed out our local options. Mario M. Brus is her pediatrician and he's the primary care doctor. Ellen Reynolds is her pediatric surgeon and she feels like she has operated and done as much mechanical repair as she can. Henry Thompson is her pediatric gastro-enterologist (SP?) and he's trying things but as of yet nothing has really worked. We are giving her Flagyl for 5 days at the beginning of every month to kill off the major over-population of bad bacteria. Then for the next 25 days we give her a probiotic trying to rebuild the good bacteria that the Flagyl wiped out while killing the bad. A nutritionist who charges $150 an hour has tried to help us get Katie on a diet that will alleviate some of her symptoms but at $150 an hour we cannot afford to work with her very much as insurance doesn't cover it at all. So Katie has a ton of gas in her small bowel. Skips one meal a day on average because her stomach hurts and has a very watery stool about every 3 to 5 days that wipes her out. We don't have answers to the why and that's kind of what inspired this whole effort on my part.Now feel free to email me and ask questions r#e#x#@#r#e#a#d#y#t#o#g#i#v#e#u#p#.#c#o#m (remove the #'s) or to call me at 208-353-3183. We can also do some Q & A here in this thread if it's okay with Steve.But in a nutshell that's kind of where we are at but there's a whole lot more to it that's almost like black magic. We just don't understand a lot of things. Why can we accidentally pull her hair out in clumps when we brush it and other things like that which blow us away.Best Regards,Rex Winn

RE: Katie

Wayne West — Thu, 12 Jul 2007 08:36:00 GMT

Wow. I had heart surgery when I was 18 months old and I can't imagine what my parents went through prior to that. Reading what her parents have gone through is simply heartbreaking. She has my sympathy and she'll have some dollars when I get home from work tonight.

RE: Katie

Steve Jones - SSC Editor — Thu, 12 Jul 2007 08:31:00 GMT

Some people have asked me a few questions, so I'll provide a couple updates here.First, I've asked Rex for a more recent update on Katie, so as soon as he gets his day going, we'll sort that out.Second, none of the money from the raffle will be used for expenses, meaning one of the corporate sponsors will eat the costs. All the donations, # tickets x $10 goes to the Winns.

RE: Katie

Steve Jones - SSC Editor — Thu, 12 Jul 2007 04:25:00 GMT

The cart is set up, but if you want to make a donation here: http://www.readytogiveup.com/, add a note that it came from SQLServerCentral and we'll get you in the raffle.

RE: Katie

Christopher S. — Wed, 11 Jul 2007 23:25:00 GMT

I noticed after clicking "Buy a Ticket" that your eWebCart only accepts credit cards (V, MC, AE) or a purchase order. Is there any chance you guys could add PayPal to that list? I feel it would significantly increase the odds of receiving donations or similar small payments.

Just a humble suggestion.

- Chris

Katie

Andy Warren — Sun, 08 Jul 2007 11:56:00 GMT

Comments posted here are about the content posted at http://www.sqlservercentral.com/columnists/pressrelease/3095.asp